Palliative care is something I never knew anything about until my terminal diagnosis. Why would I? It’s not something that is common knowledge or commonly needed until it is. Before my diagnosis, I thought of palliative care as a subset of hospice. I’ve since learned that many people view palliative care in this category. As a result, there are many misconceptions since palliative care and hospice are very different.
Let me first share my own experience. I was initially diagnosed in Orlando, where I used to live and I completed my active treatment there. My period of active treatment consisted of four (4) surgeries, IV chemo (the red devil) and radiation. I discovered I was Stage IV after the first several surgeries and initial chemo infusion, so the remaining treatment changed substantially after that discovery. My “active treatment” extended from March, 2017 through and including October 2017.
As soon as I hit the plateau of the end of active treatment and the beginning of targeted therapy, we moved from Orlando to Miami. There are a lot of reasons we chose to move and one of the less pleasant aspects of the move was having to find a new medical team. My new medical oncologist referred me to one of the pain management doctor at my new cancer center and that pain management doctor happened to also be a palliative care doctor.
I love my palliative care doctor and her team.
I don’t say that about all of my doctors. Frankly, most of the medical treatment I receive is often painful, difficult, anxiety-producing, and time consuming. I hate to wait and I wait in waiting rooms an awful lot.
I never wait for my palliative care doctor. She runs on time and she, and her team, spend a lot of time with me. They ask me about all kinds of symptoms, about my quality of life and they LISTEN. While they have to document my visit with them similarly to my other doctors (they all have to bill the same insurance!), they look me in the eye, they tell me what they are doing. If I call my palliative care doctor’s office, I get right in. I don’t always talk to a person right away, but they always return phone calls. Quickly too.
Once or twice, I encountered issues with medication, with putting together the big picture of dealing with all of my doctors and advocating for my quality of life. My palliative care doctor stepped in and interfaced with my other doctors.
I don’t know what other people’s experiences with palliative care are and I suspect that part of my experiences are directly related to the people involved, not just the discipline, but I know that’s not the entire story. So much of our medical system has become about moving the patient through as quickly as possible. I get that doctors have to make money; however, as a patient, I need to know that my medical team cares about me and my concerns.
I know that my palliative care team cares about me, cares about my pain, cares about who I am as a person.
Everyone with a terminal or even a chronic diagnosis should pursue the possibility of palliative care. It’s not for one set of patients, it’s for anyone whose medical issues interfere with their quality of life. Seeking out and maintaining my visits with my palliative care team is part of my commitment to self-care.
After all, everyone deserves to have their quality of life be a priority to someone.